The Neurology Quality-of-Life Measurement Initiative

Abstract

Cella D, Nowinski C, Peterman A, Victorson D, Miller D, Lai J-S, Moy C. The neurology quality-of-life measurement initiative. Objective To describe the development and calibration of the banks and scales of the Quality of Life in Neurological Disorders (Neuro-QOL) project, commissioned by the National Institute of Neurological Disorders and Stroke to develop a bilingual (English/Spanish), clinically relevant, and psychometrically robust health-related quality-of-life (HRQOL) assessment tool. Design Classic and modern test construction methods were used, including input from essential stakeholder groups. Setting An online patient panel testing service and 11 academic medical centers and clinics from across the United States and Puerto Rico that treat major neurologic disorders. Participants Adult and pediatric patients representing different neurologic disorders specified in this study, proxy respondents for select conditions (stroke, pediatric conditions), and English- and Spanish-speaking participants from the general population. Interventions Not applicable. Main Outcome Measures Multiple generic and condition-specific measures used to provide construct validity evidence for the new Neuro-QOL tool. Results Neuro-QOL has developed 14 generic item banks and 8 targeted scales to assess HRQOL in 5 adult (stroke, multiple sclerosis, Parkinson's disease, epilepsy, amyotrophic lateral sclerosis) and 2 pediatric conditions (epilepsy, muscular dystrophies). Conclusions The Neuro-QOL system will continue to evolve, with validation efforts in clinical populations and new bank development in health domains not presently included. The potential for Neuro-QOL measures in rehabilitation research and clinical settings is discussed.